Friday, June 16, 2017

Freya graduated from her special beginnings preschool class and is on her way to kindergarten in the fall. She will be attending the Waldorf charter school that her older sister goes to, and I am slightly terrified.

Like so much of having a special needs child, the decision to mainstream or not is a very involved, difficult one. Mainstreaming means that they attend class with their 'typically developing' peers. Before having a special needs child I would have thought this sounded like great news, that the child was doing so well they could live their life enmeshed in 'normal' functioning society. Now that I have a special needs child, one who does do quite well, I am feeling the full effect of that double-edged sword.

I am preparing to send my daughter to a school where the teachers have chosen to work with typically developing, normal functioning, status quo children, and already I miss her special beginnings teachers. She hasn't even started school yet. But her previous teachers have all chosen to work with kids like her, kids that take longer to process what you are asking them, or kids that need things explained with signs along with words, kids that need to see a chart of the order of events to handle transitions, kids that can't articulate words let alone sentences, kids that can't balance on one foot or even walk at all. I already miss knowing that the person teaching my child has made the decision to give their time in this way, to these kids, and I am so grateful for them!

I'm not saying that her teachers at the new school won't be wonderful, compassionate and attentive, the ones I know are. But do they really understand, I mean, really understand?

I attended the 8th grade graduation of this school a few days ago and while us parents of 7th graders excitedly and nostalgically talked about next year, I thought of Freya and wondered if she would make it to 8th grade in this school. Are they going to be able to deal with her and her potential issues? When they sat through the transitional meeting did they really understand when I said that she HAS to have supervision around food, or when leaving the classroom. They spoke as if eventually she would transition into being able to leave the classroom unsupervised, but I don't know that she will. Statistically, with her diagnosis, she won't.

And what happens when they figure this out? What happens when they realize that my sweet little 5 year-old charmer has a disorder known for its behavior problems, temper tantrums and manipulative behavior? I'm not sure this sweet little hippie school can handle it. And that breaks my heart and makes me feel like a shitty parent. A part of me wishes she could stay in special beginnings for her entire school career, let's just call it what it is and accept what she needs. But we've started this course and Freya is thrilled to go to her sissy's school. And, ultimately and honestly, as terrifying as it is for me, I think it will be great for her.

So I will keep reminding them the trash cans need to be emptied, I will tell Freya she can only play on the wood chipped part of the playground and not run with the older kids on the concrete, I will go on every field trip, and teach her at home what she can't pick up in class...and I will pray that she continues in life with as much grace, calm and friendliness as she does now.

What is PWS?

PWS stands for Prader-Willi Syndrome, a genetic disorder on the 15th chromosome. As stated at pwsausa.org :

Prader-Willi syndrome (PWS) is the most common known genetic cause of life-threatening obesity in children.PWS typically causes low muscle tone, short stature if not treated with growth hormone, incomplete sexual development, and a chronic feeling of hunger that, coupled with a metabolism that utilizes drastically fewer calories than normal, can lead to excessive eating and life-threatening obesity. The food compulsion makes constant supervision necessary. Average IQ is 70, but even those with normal IQs almost all have learning issues. Social and motor deficits also exist.